I have a few things to update but nothing major. Basically we're at a standstill with coming home. The team is ready for us to go home but it takes a long time to get details and tests and paperwork together. She is doing great and ready to come home!
Thursday night Natalie had a sleep study done to monitor her oxygenation levels. They hooked up brain monitors, oxygen, and all kinds of other wires to see how she is tolerating the 20 pound traction weights. If she gets positive results from the sleep study then pulmonary can release her to Ortho. We're waiting to hear official results but the preliminary comments so far have been positive.
Also Natalie has been given an NG (Nasogastric) feeding tube. The GI team and the dietician have suggested small night feeds through the tube to give her extra calories. She is currently eating about 90% of the calories she needs to gain weight. They need her at about 110% so the NG tube, hypothetically, will help get her to 110%. The tube is a temporary solution and should come out sometime before her next surgery (whenever, and whatever that will be...hopefully in the next several months). Joanna and I will change it out from home about every 6 weeks or so. So if you see her tube don't be scared of it, it's just a tube. It doesn't hurt her and she isn't being fed through it if you're talking with her. She only uses it while she is sleeping. At most it's just a bit uncomfortable and cumbersome for her. Once GI and Diet feels that her caloric intake is good then they can release her to Ortho.
Once all of the teams have released her then the Ortho team (who is the head department in the procedure) will officially release her to come home. After the release/discharge we'll go back to UNC every week or so for x-rays, weigh ins, neuro checks, and any other tests needed. There is a small chance that all of this communication will happen this weekend but realistically after about 4:00 pm on a Friday the hospital shuts down progress until Monday morning. But we're not in a rush, we had already planned to be at the Hospital for longer so if they discharge her early it's just icing on the cake. We want things to happen when they need to and when her team thinks it's appropriate.
On a practical note, Nat's bed should be delivered to the house today from Bridge Street Pharmacy and a preliminary set up for her traction bar is being machined this weekend here in Elkin. She also has a ramp built to get in and out of the house. So when she does get discharged we'll have her room ready at the house.
Thanks again for all the amazing love you all have shown our family. We love you all. I'll send more updates as they come.
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